Delivering Telegenetics Services: Review and Synthesis of Best Practices.

Rani Singh, Janet Thomas, David Flannery, Dale Alverson, Carol Greene, Elizabeth Krupsinksi, Sylvia Mann, Alissa Terry, Megan Lyon, Lori Williamson Dean

Journal: Telemedicine journal and e-health : the official journal of the American Telemedicine Association 2024;30(8):e2232-e2239

PMID: 38916873

Abstract

Before the COVID-19 public health emergency, few genetics providers used telehealth. As a response to this, many genetics providers began conducting telehealth care, referred to as telegenetics, usually with guidance from their institutions but without specific guidance related to the uniqueness of genetic services. The Telegenetics Workgroup of the National Coordinating Center for Regional Genetics Networks convened a panel of experts in the fields of telemedicine, genetics, and genomics to review the existing literature on telegenetics and synthesize best operating practices for medical geneticists, genetic counselors, and metabolic dietitians providing telegenetics services. The group searched PubMed using the terms "telegenetics," "telemedicine + genetics," and "telehealth + genetics." The group also reviewed the Northeast Telehealth Resource Center's telegenetics webliography. Websites were searched, including the American Telemedicine Association's website, Center for Connected Health Policy, and National Telehealth Resource Center for position statements, standards documents, and guidelines. The group met frequently by videoconference and discussed the literature, and using expert consensus, the group determined best practices in providing telegenetics services. These telegenetics best practices cover important aspects of telegenetics services, including, but not limited to, ongoing delivery of telegenetics services, use of special technology, legal and regulatory requirements, and considerations regarding special settings and circumstances in which telegenetics may be conducted. Recognizing the growing use of telegenetics and a future in which telegenetics continues to be part of the regular practice of genetics, this guide informs genetics providers of best practices for delivering telegenetics services to patients.

Address: Division of Medical Genetics and Genomics, Medical Specialties Institute Cleveland Clinic, Cleveland, Ohio, USA.; Department of Pediatrics, University of New Mexico, Albuquerque, New Mexico, USA.; Department of Pediatrics, University of Maryland, Baltimore, Maryland, USA.; Department of Radiology, Emory University, Atlanta, Georgia, USA.; Hawaii Department of Health, Honolulu, Hawaii, USA.; Ferre Institute, Binghampton, New York, USA.; Department of Pediatrics, Children's Hospital Colorado, Aurora, Colorado, USA.; National Coordinating Center for Regional Genetics Networks, Bethesda, Maryland, USA.; Department of Genetic Counseling, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA.
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